Up in the Air

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Aruba was amazing. Getting there was awful.

** Disclaimer: This experience is mine and mine alone. The following story is based on true events that may or may not be true of other Potsies. I do not claim to speak for anybody else.**

So let’s recap my posts thus-far. What is POTS? POTS is the body’s inability to regulate changes in blood pressure and pulse due to a malfunction of the autonomic nervous system. What is turbulence on an airplane? Pressure change.

Putting two and two together, what happens when you put a Potsie on a turbulent airplane? Said Potsie does not become nervous on the plane because said Potsie has flown many times before. This being said, the Potsie has not flown since her POTS has come out of its shell, so to speak. So, combining a person with very little ability to regulate pressure in her own body, and significant pressure changes around her, this Potsie’s body will have a VERY difficult time remaining upright.

If you couldn’t tell from my ranting, that Potsie would be me.

I recently went to Aruba with my family and it was a wonderful time! Ask me about it if you want details of the trip! What I want to discuss now, though, are my thoughts on flying with POTS.

I’ve never flown with POTS before, so this was a new adventure.

Flying down to the island was relatively okay. I only blacked out and lost my vision a little bit during takeoff and landing, resulting in me crying twice and struggling to stay conscious. That was a walk in the park compared to the return trip.
IMG_3803I started out the trip by having anxiety issues at the airport. That’s when the POTS started to go downhill. So we got a wheelchair and whizzed through security. Great. We waited at the gate for about four hours, during which time I donned my compression garments. Waist- high tights and full-length sleeves. (Keep in mind, this was Aruba…… hot to begin with, made hotter by my new fashion statement.) We got on the plane, which I was dreading to begin with, after flying down and blacking out on takeoff and landing, and I sat down in my seat. I immediately started crying…. We hadn’t even moved yet.

We took off…. I blacked out again. I was still wearing all of my compression gear, chugging my NormaLyte, and squeezing every muscle of my body, fighting to stay conscious.IMG_3807

We got into the air and the turbulence started. As I stated before, turbulence is a change in air pressure. I’m sorry to burst everyone’s bubble, but those airline cabins are not as pressurized as you might think….. I. Felt. Everything. Every little bump sent me spinning. And chugging. And swelling. And struggling. And crying. And fighting to stay upright.

This went on for the entire flight. I was fighting my body for five hours straight. It was all- out war.

Anyway, all of this is just to say that when flying as a Potsie, you should be prepared to tackle your POTS head-on. I didn’t know what to expect from flying and now I know that I love traveling, but flying is not something I’d like to do very often in the future.

Email me at potsienb@gmail.com and tell me about your travel experiences! I’d love to hear how you all manage while everything is “up in the air!”

Fine thanks, and you?

I had an interesting thought the other day: How and why do you condense your story?

When I tell a stranger or even someone I know about POTS and how it affects me, I always condense the story; I rarely share my entire saga of symptoms to diagnosis to now, or even how I’m doing on a daily basis. But why do I do that? Does everyone do that?

When asked, I normally say that I have a disorder that affects me in the way that whenever I sit up or stand up, my blood pressure drops and my pulse rises, making me nearly pass out. Short and simple, though we all know by now, based on reading my previous posts that there is so much more to POTS than just that.

Shortening the story still gets a basic point across, but does this negate the severity of the issue? In my opinion, yes, it sort of does, but not necessarily in a bad way. If you tell a story of a significant or severe health problem, people will often ignore what you are actually saying to them, in favor of offering to help and starting a conversation about everything you’re doing to try to “get better.” In my experience, people retain more information when the story is down-played, to an extent, so that emotion becomes less involved in the interaction and the person asking can become more informed, rather than more worried.

For example, when asked, “Hi, how are you today?” most people respond, “I’m good, how are you?” — BAM- downplayed. The proper response is not “I feel like I may keel over at any moment,” or “I probably shouldn’t be standing right now, but I’m going to stick it out anyway. How are you?” I downplay so that I don’t start a conversation about how the other person can help or what suggestions they can provide…… How do you politely say “You can’t help me, but I’ll smile and nod because no, eating a banana will not make my foot cramps go away and no, I don’t really want to sit down so please don’t make me?”

I think I downplay selfishly- I often don’t want to talk about it when I’m out at a party or with friends and family, so I say I’m fine. I’d be interested to know how many other Potsies do this, too. For the people reading this who know me- This isn’t your cue to start worrying and asking more questions and demand the truth. in fact, it is the opposite. This is just a clarification of why, when you ask, I’ll always say “I’m doing great, thanks. Yes, I’m feeling much better lately.”

So does downplaying POTS negate the severity of it? Yes, but it also takes the pressure and attention off of myself for a bit, so even though I may ultimately be hindering my ability to show people just how severe this disorder is, I’d rather write about it or discuss it on my terms than tell you when we’re out with a bunch of other people. It is a very difficult disorder to have, both physically and mentally, as I’ve shared a lot over the course of writing this blog so far, and sometimes it’s better for me to keep a bit quiet about what’s actually happening, in favor of alleviating some of the focus on my physical problems and the attention that will inevitably be directed toward me if I share what symptoms I am having that day.

I’m not advocating this course of action in any way, just sharing some of the thoughts I’ve been having recently.

If any Potsies are reading this post, let me know in the comments or via email how you handle the question, “How are you doing?” at potsienb@gmail.com.

The Miracle Mix

I’d like to share with you my new favorite Potsie product- Normalyte.IMG_2968

I discovered this miraculous mixture at the Dysautonomia International Conference this year, where they were participatng as part of the vendor fair. I ran into the Normalyte developpers there, and got talkng to Sam Lee, one of the people who created it.

They explained to me that it is a powdered drink mix, developed by pharmacists and chemists, in order to achieve better hydration by using the body’s natural chemistry. So from my very limited understanding of biochemistry, the body has glucose-sodium receptors (not sure if that’s their real title, but that’s what I’m going to call them), that transmit glucose and salt at the same time to parts of the body, hydrating them. You can’t transmit one without the other, so by creating a drink with both glucose and sodium at the same time, the body can absorb it better, making a much better sodium AND fluid intake for those of us that need it.

NormalyteYou just open a packet, pour it into 1 liter of water, and enjoy 1 liter of fluids plus 4 GRAMS of sodium. And it’s much easier on the stomach than salt tablets.

So- my opinion:

Honestly, it takes a little while to get used to it. The only flavor is orange, for now, but they are working on developing more flavors in the near future. It’s not bad, but one thing I will say is that it tastes thick. I cant think of a better word to describe it. I guess it has to be thick because there’s so much good stuff in it.

To help get used to the flavor, I started mixing it with things- It’s really good mixed into juice, especially orange juice with a little vanilla extract. It tastes like a cream-sickle!

Anyway, Normalyte is fantastic. Its a great pick-me-up, especially when having a potsie episode, or even just a good start to the day, drinking it right after waking up. I HIGHLY recommend it, even just to use intermittently, or on an as-needed basis. It is full of so much good things for us, Potsies.

You can buy it on Amazon HERE. Go do it. Now. It will be your best decision today.

You can also check out their website HERE.

Try it, then email me at potsienb@gmail.com 🙂 enjoy!

Life after DysConf- Another hospital visit, but not what you think

I think it’s pretty clear that I haven’t written in a while, and here’s why:

So I got home from DysConf, and really should have finished up my conference blog posts, but, to be totally honest, I got lazy. No excuses- I just didn’t write much.

Then things got interesting. I headed out for a run, as I had done nearly every day this summer. It was after dinner and just beginning to get dark out. Let’s call it “dusk.” It was still light out when I left to go running, but I decided to throw on my super-cute reflective-yellow vest, just in case, which turned out to be a good idea because I ended up deciding mid-run to keep going, making it an awesome 5-miler. I had been doing well with running lately, so why not? Sure, it was a little dark, but I had my phone with me, which includes in it a handy-dandy flashlight.

It would be fine, right?

WRONG.

I was viciously attacked by a rogue sidewalk. I tripped over seemingly nothing, sending myself flying forward, trying to brace for the impact against the ground with my arms. Luckily, I didn’t smash my face into the pavement, but I did bend the fingers on my right hand way too far backwards.

As some of you know, I’m an EMT, so I went all “first-aid” on myself, thinking, “I know I’m injured. Where am I injured?” I slowly pieced together that no major damage had been done to any vital parts of my body, and that I couldn’t move my right hand. Okay- I can work with that.

I picked my phone up off the ground to call my parents to come get me from the nearest corner, as I stood up. Bad idea. I blacked out and sat back down. I’d like to be able to claim POTS on that one, but I think it was more anxiety exacerbating my POTS symptoms than anything- I was worried that I had broken my hand…. and also probably a bit worried to tell my dad I had cracked my phone… again.

I called home, asking my parents to come get me, while laying on the sidewalk, and slowly peeled myself off the ground before they showed up. I said very calmly to my mother, “I fell, and I need an x-ray. I think I broke my hand.” After a little while of sitting at home watching “House Hunters,” and holding ice on my hand and wrist, it started swelling, rather than feeling better. Awesome.

IMG_2980I went to the hospital.

I was right.

Long story short- we went at 10pm and got home around 2 am, with my hand in a splint and Codeine in my system. I was told that I had broken two fingers and my wrist, and had torn a whole bunch of ligaments in my hand.

I went to the Orthopedic two days later. As it turns out, I had only broken one finger (my first broken bone ever), but yes, I did tear a lot of ligament fibers. He said to picture it like a rope- I tore a lot of little strands, but the rope itself was still intact, so that was good news, I guess.

I was in a splint for a few weeks, unable to write, and barely able to type, which made trying to do well at my new job even more of a challenge than it had been before. Hence, not posting here for a while. Now my hand is splint-free, and generally doing well.

(PS- note the compression socks I’m wearing. Stylish, no?)

So yeah, that’s my story of why I haven’t posted in a while- I was doing so well with running and getting in a good workout every day that I got careless and tripped. Simple as that. I kind of wish I could claim POTS, in some twisted way, just to have a better story than “Yeah, I’m just a spazz,” but no such luck. So now I’m good to go, and will hopefully write more. Hopefully…..

As always, feel free to email me!—– potsienb@gmail.com

DysConf 2015: Sunday

So the conference is now over, which makes me sad, but it was a good wrap-up to a great weekend.

This morning we got up at the crack of dawn again (still around 7:15), to shower and have breakfast. This morning was just my mom and I at the breakfast table. We finished fairly quickly and just hung out in the large conference room before the opening lectures began. The day began with a lecture on “Gadgets, gizmos & the new world of syncope,” from Dr. Blair Grubb, which, from what I remember of it, had something to do with tracking syncope? Not sure- I have to go back and look at the slides for that one again… It was early. I was tired. (Those are my excuses.)

The day continued with several research updates, from Dr. Joshua Milner, Dr. Hasan Abdallah, and Dr. Satish Raj. Not gonna lie- It was really interesting. I do enjoy hearing about efforts to expand our ability to receive treatment as well as to promote advocacy for awareness and funding to figure out more treatment. There was probably some redundancy in there somewhere, but that’s okay. Point is- It was very interesting.

Going along with the morning’s motif of a desire for advocacy and awareness, I decided to go to the Dysautonomia Advocacy breakout session, which provided a lot of fabulous ideas on how to promote awareness in your community, and even on a larger scale. Everything from “cookies for a cure” to lighting up the Empire State Building.  imageIt was awesome to hear about what people have already done, are planning to do, and may plan for in the future  lots to think about, going forward- I may have gotten a few good ideas for future awareness projects so keep an eye out for that in the coming months!

Moving on, at today’s lunch, we got our boxes containing a sandwich, a bag of chips, and a cookie, and sat down. Not too much later, another family sat with us. A guy named Matthew, around two years younger than myself, and his parents. We learned that they are from Western Canada and were going to be touring DC while they were in the area. imageThey were really nice and great to talk to, and put up with all of my Canada jokes, which was good, too. (Did you have to drive through snow to get here? I bet it’s really nice up there during the two weeks of Summer)

We parted, and my mom and I headed to the vendor fair for a bit. I got a snazzy bravelet, supporting dysautonomia, and met the developers of a drink mix called Normalyte (which I’ll create a whole post about later!). We then went back to our room to change and go to the gym. I did that for a while and rushed back down to the conference center for the closing Q&A session before the conference officially ended.

And that’s a wrap! Keep following for more information from the conference. I took a bunch of notes from most of the sessions that I went to, so I’ll slowly start posting them on here, for reference. Admittedly, I took better notes in some sessions than others, but I’ll do my best to add to the notes I have to give as much info as I can.

Thanks for staying tuned and, as always, feel free to email me with any questions, comments, or just to say hi!

potsienb@gmail.com

DysConf 2015: Saturday

The second day of this year’s Dysautonomia International conference is coming to a close, and, as anticipated, it has been a long day jam- packed with information. My mom and I woke up again around 7:30 to go down to breakfast in the hotel’s little restaurant before the day began. Truth be told, she got out of bed earlier than I did to shower, while I soaked up every last minute of sleep I could get. So we got breakfast- powdered eggs, fruit, and croissants with juice. Not bad at all! We sat with one of the moms that we had met yesterday, and were later joined by another mother of a teenage potsie. We talked about which breakout sessions interested and applied to all of us, and ultimately split up and went to see the opening remarks, made by Lauren Stiles, president of Dysautonomia International.  She talked about the organization and what they stand for- she spoke a bit about advocacy and awareness of the disorder, and she discussed the agenda for this weekend.

Not long after her speech, we heard a talk from Dr. Wolfgang Singer about mayo clinic research on autoantibodies in POTS that would be taking place over the course of this weekend. His goal was to get 100 POTS patients to participate in this study this weekend, as it is the best place to find a large number of people meeting his criteria all at once.

Dr. Thomas Chelimsky then stood at the podium to talk about his own research. His most recent article titled, “Will the Real POTS Please Stand Up.” I guess it was a reference to some old television show that went completely  over my head.IMG_2969 I thought it was a reference to “slim shady.” Apparently not.

Anyway- after that, I went to participate in the research study by having a brief physical exam by Dr. Singer, filling out an online questionnaire, getting my blood drawn, then getting some orthostatic testing done. Yeah that was a bad idea- getting blood drawn always makes me potsie. So does getting my orthostatics done… Combining the two within half an hour of each other wasn’t such a hot idea. I got a little dizzy…. and by a little dizzy, I mean it was difficult to stay upright, but I guess that’s fairly normal. When I stood up after the five minutes of laying down, to get my blood pressure taken, I couldn’t focus my eyes. So that was fun. As soon as I was done with that, though, we got lunch.

There were a whole bunch of gluten free options, which was really interesting to see- Is it weird that I always feel bad taking that food? It always looks so good! But I also don’t want to take it from someone that actually needs to be gluten free. So I’m in a perpetual state of confusion-do I go for it or do I not? I didn’t… this time.

So after a very confusing lunch, we went to “Breakout Session B- Panel Discussion: POTS Subtype- Does it matter?” The answer to this hard-hitting question has been determined to be “a definite sort of.” Not exactly helpful. What it really boils down to is that there are a few different types of POTS, all of which can overlap, and none of which is completely definitive, so in a way, it’s good to have a general idea of what the types are and how they affect the body, but it’s not completely useful information in that it probably won’t be too determinant of a course of treatment, as that will ultimately be determined by the symptoms, rather than an arbitrary label.

That was a mouthful.

Anyway, immediately following “Breakout Session B” was “Breakout Session C- Service Dogs For Dysautonomia.” Personally, I don’t really need one, but I think the concept is incredible, and the logistics are fascinating. (more details to come on this later.)

IMG_2976Then I went to the gym. There was a two-hour long break, so I went to sweat out all my exhaustion…. make sense? Yeah it doesn’t make sense to me either, but I did it anyway. The gym at the hotel was pretty good! All the standard stuff- some cardio, machines, free weights… and other people wearing compression garments. You know, all the normal things found at every gym, right?

Then came the fun part- the banquet. I sat with my newfound potsie people from yesterday and chatted with a few parents of a potsie from Massachusetts, and having a grand time. There were speeches, a photographer, a silent auction, more confusing gluten-free food, and merriment among all. It was fantastic. Later on in the evening, when all the speeches were finished and the food was all done, there was dancing, but we didn’t stay for that. I was exhausted. Now I’m sitting here finishing up this post before bed, and it’s roughly 9:30.

So far everything has been great, but definitely exhausting. I’ve been chugging fluids like it’s my job, and popping pills at my usual rate of ‘way too much.’ More from the conference tomorrow. Sweet dreams, Dizzies.

PS- Here’s a photo from yesterday:IMG_2967

DysConf 2015: Friday

One day down, two to go, and what a day it has been! 

We got up at what I like to consider the crack of dawn- 7:30 am. My mom and I were headed down here to Herndon, VA for the annual Dysautonomia International Conference, or Dysconf, for short. We left the house by about 8:30, stopping only once on the way down so that I could urinate. Sorry to be blunt, but when you drink this many fluids on a daily (or hourly) basis, nature calls at inconvenient times. 

When we did stop, we figured we might as well get some snacks. There was an “Auntie Anne’s” pretzel place, and we stocked up on salty food and Gatorade, as one does when en route to a Dysautonomia conference. As we were just about to leave the rest stop, though, something unusual caught my eye. 

Pickles. Individually packaged pickles, with their own juice and everything! A strange find, yes, but knowing from past experience that pickles are extremely salty, I had to pick up a package and see for myself what the sodium content was. 920mg for just the one GIANT pickle. And the best part- zero calories! I had to have one. So I did. And you should too.  

So long story short, we got to Virginia, checked into the hotel, went to a random Irish pub for lunch and ate way too much. We then had to go to Kohl’s to find me a sweater because the first floor of the hotel, where the conference is held, is absolutely freezing. It’s truly absurd. I then went to the gym, showered, and we headed down to the bar, where it was fairly easy to tell who was a potsie person and who wasn’t, based on the size of their water bottle.

We socialized, we ate, and we chatted with people some more. I met IAmChronicallyWell, a fellow potsie blogger, and was (and am) totally star struck. We had a moment of “omg I follow your blog,” “I follow yours, too,” which was so cool. (Hi Nicole!) 

Anyway- today has been great. I got to see “my people” again, which doesn’t happen very often. This is probably one of very few places in the world where you can strike up a conversation with someone based on when the last time they passed out was, and I couldn’t be happier. 

Stay tuned for more from DysConf 2015!